Talking to others about brain injury - a guide for young people

This article aims to give young people some ideas for speaking with friends and family about brain injury.

You might have already found that some people don’t understand acquired brain injury.1, 2
In fact, lots of parents say they hadn’t heard of it before their son or daughter was affected. 3
So you might have to tell other people some of the things you have learnt about brain injury.
This might not be easy and you may get tired of repeating the same things over and over.
But you don’t have to tell everybody about acquired brain injury.
You may only want to talk about it to some important people in your life: your friends, a boyfriend or girlfriend, family, or perhaps a teacher (or employer if you have a job).
Hopefully, it will mean these important people are less likely to ‘get the wrong idea’ about your injury.4, 5
You may have difficulties with fatigue and you often feel tired, for example.
Someone who doesn’t know about brain injury might think someone who has fatigue is just being lazy or trying to get out of doing something. 6, 7
So it might be useful to tell people about it if you have difficulties with fatigue.
Another example might be if you find conversations difficult. You might have difficulty processing information and you need some time to gather your thoughts.8
Someone who doesn’t know about brain injury might think this was rude.9
They might not realise it’s something you can’t help.
So sharing information can be useful in avoiding this kind of misunderstanding.

What to share

What information you’d like to share with people is entirely up to you.
But you might want to think about situations in which you’d like to offer an explanation.
Perhaps you benefit from taking a break every now and again, from school or work. This kind of information would be good for a teacher or employer to know.
Some people with acquired brain injury experience seizures, and they might like to share this information with people they spend a lot of time with.

Talking about brain injury in general

We’ve talked about how sharing information about your brain injury can help.
But it might also be useful to look at some of the more general points about acquired brain injury.
Most people don’t know too much about brain injury and it may be up to you to help them out.
Let's look at this book’s definition of acquired brain injury.
“You might hear it shortened to ‘ABI’. The ‘acquired’ part means only that the child wasn’t born with their injury – it is something that has happened later.”
Some other key points might be:

That everyone is affected by brain injury differently.

There are some things that people with acquired brain injury have in common. But there are lots of differences too, because each of our brains is unique.10

That lots of people make a good physical recovery from brain injury.

There might be ‘hidden’ things happening that might not be obvious at first. 11

Questions you might be asked

It’s up to you whether or not you want to answer people’s questions.
Your health is your business, after all.
But if you feel you’d like to help people understand acquired brain injury, we’ve included some ideas for questions and answers here.

Can it be cured?

The brain is the most complicated part of our bodies and any injury to it can also be very complicated.12
There is no single ‘cure’ or simple treatment for acquired brain injury. It isn’t like there is a simple operation or a pill you can take.13, 14
Instead, people with acquired brain injury usually have different therapies, depending on what their individual difficulties are.

How does brain injury affect people in the long run?

There’s nothing wrong with being honest and saying that nobody has all the answers.
Much of the time, even the experts may not know what the outcome will be.
But in all this uncertainty there is also great possibility.
The doctors might not be able guarantee a full recovery, but neither can they rule out the dramatic improvements some people have seen.15, 16

Savage RC, Depompei R, Tyler J, Lash M (2005) Paediatric traumatic brain injury: A review of pertinent issues. Pediatric rehabilitation, 8 (2), pp92-103.
p98: "Because learning is a primary task for youths and because learning is language-based , it is often the inability to use adequate language skills in learning and social environments that interferes with successful interactions. Decreased communication skills sometimes lead to loss of friends, misunderstandings or poor performance on school or job tasks."